Joy

January 8, 2006

Dear Bob

I am not sure what Dr Enlander wrote about Kim Kimberley and the CAA.

He is not timid, having sparred with Strauss of NIH and Wessely in London.

He also wrote to Prime Minister Tony Blair pointing out the British Government

grant of several million pounds was made to psychiatrists who were pointing

their research to a psychiatric determination rather than an open minded

endpoint. He has not been silent over the years when CFS/ ME has been maligned,

forgotten or misrepresented.

Joy

Research Assistant

for example:

The following letter was published along with an answer from the authors.

CLEVELAND CLINIC JOURNAL OF MEDICINE VOLUME 69

NUMBER 1 JANUARY 2002

Human herpesvirus 6

(JULY 2001)

TO THE EDITOR: The article by Drs. Chemaly and

Rehm on human herpesvirus 6 (HHV-6)

infection 1 was very interesting but left out

one particular associated symptom of this

insidious virus. This symptom is chronic

fatigue, which is markedly debilitating and has been connected to Chronic

Fatigue Syndrome.

When HHV-6 was first defined by

Salahuddin et al in 1986, 2 the virus was

ubiquitous and the symptoms of the disease it

causes were nebulous. Although little knowl-edge

about HHV-6 has been added over the

years, it seems that more than 90% of the

population is exposed, most exposure does

not lead to prolonged disease, and its common

manifestations are low-grade infection,

usually mild, accompanied by lymphadenopathy,

debilitating fatigue, and retro-orbital

headache. In some patients the malaise can

be prolonged and can be the initial manifestation

of chronic fatigue syndrome, the exact

cause of which is still unknown.

It is possible that the HHV-6 virus, like

its fellow herpesviruses, lurks in tissues or

that in sensitized patients it produces elevated

cytokines or other immune system effects

that can manifest in prolonged symptoms.

DEREK ENLANDER, MD, MRCS, LRCP

New York

REFERENCES

1. Chemaly RF, Rehm SJ. A young woman with fever,

headache, and lymphadenopathy. Cleve Clin J

Med 2001; 68:584593.

2. Salahuddin SZ, Ablashi DV, Markham PD, et al. Isolation

of a new virus, HBLV, in patients with lymphopro-liferative

disorders. Science 1986; 234:596601.

IN REPLY: We appreciate Dr. Enlander's query

regarding possible links between human herpesvirus

6 (HHV-6) and chronic fatigue syndrome,

a well-characterized illness of

unknown etiology.

Because patients with chronic fatigue

syndrome may have an abnormal immunologic

status suggestive of immunosuppression,

several ubiquitous viruses, especially

the herpesviruses (ie, Epstein-Barr virus and

HHV-6), were implicated in its pathogenesis.

However, multiple studies in patients

with chronic fatigue syndrome, using a variety

of markers of HHV-6 infection, produced

results that were at best contradictory, with

few suggesting an association between these

diseases.14 A recent case-control study 5

compared rates of infection with HHV-6A,

HHV-6B, or HHV-7 among patients with

chronic fatigue syndrome and control subjects.

The authors found no evidence that

infection with these herpesviruses is associated

with chronic fatigue syndrome.

Furthermore, an association between

HHV-6 and multiple sclerosis generated a

considerable interest for the past few years

but no causal link has been established.

Because of lack of compelling evidence

linking HHV-6 infection with chronic

fatigue syndrome or multiple sclerosis, we

elected not to discuss this issue in our review

of HHV-6 and infectious mononucleosis-like

syndrome.

ROY F. CHEMALY, MD

The Cleveland Clinic

Foundation

SUSAN J. REHM, MD

The Cleveland Clinic

Foundation

REFERENCES

1. phs SF, Henry B, Balachandran N, et al. HHV-6 reactivation

in chronic fatigue syndrome. Lancet 1991;

337:13461347.

2. Buchwald D, RL, Pearlman T, et al. Viral serologies

in patients with chronic fatigue and chronic

fatigue syndrome. J Med Virol 1996; 50:2530.

3. DiLuca D, Zorzenon M, Mirandola P, et al. Human herpesvirus

6 and human herpesvirus 7 in chronic

fatigue syndrome. J Clin Microbiol 1995;

33:16601661.

4. Patnaik M, Komaroff AL, Conley E, et al. Prevalence of

IgM antibodies to human herpesvirus 6 early antigen

(p41/38) in patients with chronic fatigue syndrome.

J Infect Dis 1995; 172:13641367.

5. Reeves WC, Stamey FR, Black JB, Mawle AC, JA,

Pellett PE. Human herpesviruses 6 and 7 in chronic

fatigue syndrome: a case-control study. Clin Infect

Dis 2000; 31:4852.

Letter to British Medical Journal Jan 2002

Sir, I am dismayed at the editorial of Strauss and his current

knowledge of ME/ CFS. He promotes the thought again that this disease is a

shallow

mainifestation of a patient's mind, and the only treatment therefore is

cognitive therapy, pacing and graded exercise. In fact grading of exercise is

very difficult, more often overexercise produces relapse. He further shows his

lack of knowledge by purveying the notion that the disease is a 1980's

invention. Ramsay's seminal work in the Royal Free Hospital seemingly is

unknown to

him or is to be sloughed aside.

His position as chief of the Laboratory of Clinical Investigation, National

Institute of Allergy and Infectious Disease certainly was not obvious in his

thinking related to research approaches in this disease.

The NIH credo in ME/ CFS is not new but continues to be immersed in old

doctrine rather than new ideas.

Enlander

1 E Straus BMJ 2002; 324: 124-125

2 Ramsay M The saga of the Royal Free Disease 1955 ME Assoc.

======================

In a message dated 1/8/2006 3:45:37 P.M. Pacific Standard Time,

blue74730@... writes:

I just did a search on Immunoprop using 's search engine. There

was a web site for a Dr Enlander's newsletter. I was pleasantly

surprised to find a letter I had written on Co-Cure concerning Kim

Kimberley and the CAA. I wrote it over a year ago. I feel honored that

Dr Enlander would have posted it on his newsletter.

It is apparent that Dr Enlander is concerned for PWC's and has been for

sometime. It is refreshing to have such a doctor on our side. Please

thank him personally for me. Several of us have been ill for over 25

years and myself over 30 years. I am beginning to believe that there is

life after CFS. I hope that I can figure out how I can join his

research study. Going to NYC when I had my normal mind was an

experience, but it is very scary now...lol

Bob

from

Joy

Research assistant to Dr Enlander

_www.enlander.com_ (http://www.enlander.com/)

January 9, 2006

Try LIVING in NYC while your building is undergoing massive demolition

to turn it into high end condo and you are over most of the

construction and you have been SLIMED by lyme!

>

> In a message dated 1/8/2006 6:46:11 PM Eastern Standard Time,

> blue74730@y... writes:

>

> Going to NYC when I had my normal mind was an

> experience, but it is very scary now...lol

>

> Bob

>

> Bob

>

> You are not alone......

>

> mjh

> " The Basil Book "

> http://foxhillfarm.us/FireBasil/

>

January 9, 2006

>

> Dear Bob

> I am not sure what Dr Enlander wrote about Kim Kimberley and the CAA.

He is also a good advocate. He didn't do the writing about Kimberley

and the CAA, I wrote a post on co-Cure about what she wrote to me and

Dr Enlander put my letter on his newsletter. Like I said, I felt

honored and that was when I first realized his advocacy interest also.

Bob

April 11, 2006

Thank you! I am in the San Francisco area and my gastroenterologist

just refered me to go see a specialist (I don't know which kind!)

named Dr. Bill Snape, at California PAcific Medical Center, in a

couple of weeks. According to the doctor, Dr. Snape's done a number

of dialations, no mention of surgeries. In fact, the doctor seemed

highly against surgery. I haven't really had much information on

this diagnosis yet, it's taken awhile for the doctors (oh so many

doctors!) to figure out what the problem is. I'm hoping to get some

questions answered by Dr. Snape when I see him.

If anyone has suggestions of other doctors to see in N. California, I

would appreciate it.

Joy

>

> Welcome to the group, Joy and the many others over the past few

weeks that

> I have missed (while earning my TRIP TO ARUBA!! yeah!!!!).

>

> Please let us know where you are located and hopefully someone can

refer you

> to a specialist near you that knows about achalasia. Many doctors

don't

> know much as it is rare.

>

> There are " tricks " to use to help you...people will share them, so

keep

> reading, or read past posts. However, there is no cure.

Homeopathy has not

> yet proven effective for long-term treatment.

>

May 16, 2006

Thank you ! Unfortunately I don't think we will cross! I'm

completely up for and into meeting with anybody here I can, sharing

this kind of situation & communicating I feel as if I know some of you

already! We'll be up & headed to the airport on the 18th though, she's

being casted on the 17th, I hope it's not pushing it too close to have

her traveling! The other didn't seem to think so, I'm hoping

it'll be okay & we'll have her portable stroller w/us too... And RE:

that (the umbrella stroller) do you know if you're allowed to fold it

& store it on the plane? Just curious if that will work our for us!

And Sol has been FANTASTIC out of her cast as I'm sure you can

imagine, I know that's probably not the way you're meaning though

If you've noticed we haven't been around much, trying to make up for 3

months of decreased mobility & lost time @ the park, slide, zoo, wild

animal park, sea world, etc.. Funny but true! I'm sure you meant her

curve and for the most part it has seemed to hold it's form (from the

initial removal) fairly straight looking, minimal hump, but this past

week I think I've noticed a slight difference, slight worsening, I'll

only know for sure once I get her comparison measurements, I'm just

PRAYING they're not too extremely different! I know that's probably

wishful thinking though & I just hope Dr. can get good

correction on her, and I would love to see her RVAD decreased w/the

initial casting. I'm just SO anxious to find all this out & get our

end result for the next few mos.. not looking forward to it on the

same hand however, it's been way too enjoyable to have it off, but

bothersome to me at the same time when feeling along her spine. We

have a pool though so she's got a lot of swim time in which is cool,

it's been a nice break for her & it shows in her personality & spirit!

So I wanted to ask you too, how has Ian done in the fiberglass? Do you

have any preference to that over plaster? Are you having it removed

locally on Weds.? Well I'll be anxious to see how his skin did & to

hear all your measurement results... it's too bad we won't cross paths

at all, maybe next time though since we'll be on the same casting

rotation time frame! I'll probably get around to posting pics after

this next one, I've taken a lot since her cast removal, including of

her skin breakdown which doesn't look as bad in the pics as it was in

real life!

But good luck to you too, hope everything goes well w/removal, travel,

& recasting, will look forward to exchanging updates once we return!

Take care & thanks for checking!

~Joy

>

> Good luck this week at Erie. Are you staying in Parent Housing and

what day are you guys leaving. Just wondering if we will cross

paths? If you are still there on the 18th, keep an eye out for me. I

have long red hair...you can't miss me!

>

> How is Solana doing out of her cast?

>

> Noelle (12-2-01)

> Ian (8-15-04)

>

May 16, 2006

What a bummer that we won't get to meet up. We'll be there bright and early Wed morning - 6:30 am, UGH!!

Well, he seems more mobile in the fiberglass. However, I am not sure if it is because of it being fiberglass or the fact that I made them trim it a lot in the hip area. So, I really like how mobile he is and that he can actually sit on the floor which he couldn't do in the other two cast (but, they also came down super low on his hips). I guess I would prefer the fiberglass so long as we are getting the same great results that we got in plaster.

We are actually having the cast removed today! I am anxious to see how his skin and spine look. We leave tomorrow, but won't be getting up there until late as it takes us 9 hours (could be done in 8 if we didn't have to stop for Ian, lol).

Anyway, good luck tomorrow! I hope her numbers look good.

Noelle (12-2-01)Ian (8-15-04)

Re: Joy

Thank you ! Unfortunately I don't think we will cross! I'm completely up for and into meeting with anybody here I can, sharing this kind of situation & communicating I feel as if I know some of you already! We'll be up & headed to the airport on the 18th though, she's being casted on the 17th, I hope it's not pushing it too close to have her traveling! The other didn't seem to think so, I'm hoping it'll be okay & we'll have her portable stroller w/us too... And RE: that (the umbrella stroller) do you know if you're allowed to fold it & store it on the plane? Just curious if that will work our for us!And Sol has been FANTASTIC out of her cast as I'm sure you can imagine, I know that's probably not the way you're meaning though If you've noticed we haven't been around much, trying to make up for 3 months of decreased mobility & lost time @ the park, slide, zoo, wild animal park, sea world, etc.. Funny but true! I'm sure you meant her curve and for the most part it has seemed to hold it's form (from the initial removal) fairly straight looking, minimal hump, but this past week I think I've noticed a slight difference, slight worsening, I'll only know for sure once I get her comparison measurements, I'm just PRAYING they're not too extremely different! I know that's probably wishful thinking though & I just hope Dr. can get good correction on her, and I would love to see her RVAD decreased w/the initial casting. I'm just SO anxious to find all this out & get our end result for the next few mos.. not looking forward to it on the same hand however, it's been way too enjoyable to have it off, but bothersome to me at the same time when feeling along her spine. We have a pool though so she's got a lot of swim time in which is cool, it's been a nice break for her & it shows in her personality & spirit!So I wanted to ask you too, how has Ian done in the fiberglass? Do you have any preference to that over plaster? Are you having it removed locally on Weds.? Well I'll be anxious to see how his skin did & to hear all your measurement results... it's too bad we won't cross paths at all, maybe next time though since we'll be on the same casting rotation time frame! I'll probably get around to posting pics after this next one, I've taken a lot since her cast removal, including of her skin breakdown which doesn't look as bad in the pics as it was in real life!But good luck to you too, hope everything goes well w/removal, travel, & recasting, will look forward to exchanging updates once we return!Take care & thanks for checking!~Joy>> Good luck this week at Erie. Are you staying in Parent Housing and what day are you guys leaving. Just wondering if we will cross paths? If you are still there on the 18th, keep an eye out for me. I have long red hair...you can't miss me!> > How is Solana doing out of her cast?> > > > Noelle (12-2-01)> Ian (8-15-04)>

May 16, 2006

Hey Jen-that's when we would've been there if we hadn't had Evan's cast done early on the 2nd- I would've loved to meet both you and Joy! So are you doing the waterproof again? Good luck to you and Joy- hope your kids do great and that your numbers are good. Have a safe trip and let us know when you get back how it was!! and Evan Claflin <noellesmommy@...> wrote: What a bummer that we won't get to meet up. We'll be there bright and early Wed morning - 6:30 am, UGH!! Well, he seems more mobile in the fiberglass. However, I am not sure if it is because of

it being fiberglass or the fact that I made them trim it a lot in the hip area. So, I really like how mobile he is and that he can actually sit on the floor which he couldn't do in the other two cast (but, they also came down super low on his hips). I guess I would prefer the fiberglass so long as we are getting the same great results that we got in plaster. We are actually having the cast removed today! I am anxious to see how his skin and spine look. We leave tomorrow, but won't be getting up there until late as it takes us 9 hours (could be done in 8 if we didn't have to stop for Ian, lol). Anyway, good luck tomorrow! I hope her numbers look good. Noelle (12-2-01)Ian (8-15-04) Re: Joy Thank you ! Unfortunately I don't think we will cross! I'm completely up for and into meeting with anybody here I can, sharing this kind of situation & communicating I feel as if I know some of you already! We'll be up & headed

to the airport on the 18th though, she's being casted on the 17th, I hope it's not pushing it too close to have her traveling! The other didn't seem to think so, I'm hoping it'll be okay & we'll have her portable stroller w/us too... And RE: that (the umbrella stroller) do you know if you're allowed to fold it & store it on the plane? Just curious if that will work our for us!And Sol has been FANTASTIC out of her cast as I'm sure you can imagine, I know that's probably not the way you're meaning though If you've noticed we haven't been around much, trying to make up for 3 months of decreased mobility & lost time @ the park, slide, zoo, wild animal park, sea world, etc.. Funny but true! I'm sure you meant her curve and for the most part it has seemed to hold it's form (from the initial removal) fairly straight looking, minimal hump, but this past week I think I've noticed a slight difference,

slight worsening, I'll only know for sure once I get her comparison measurements, I'm just PRAYING they're not too extremely different! I know that's probably wishful thinking though & I just hope Dr. can get good correction on her, and I would love to see her RVAD decreased w/the initial casting. I'm just SO anxious to find all this out & get our end result for the next few mos.. not looking forward to it on the same hand however, it's been way too enjoyable to have it off, but bothersome to me at the same time when feeling along her spine. We have a pool though so she's got a lot of swim time in which is cool, it's been a nice break for her & it shows in her personality & spirit!So I wanted to ask you too, how has Ian done in the fiberglass? Do you have any preference to that over plaster? Are you having it removed locally on Weds.? Well I'll be anxious to see how his skin did & to

hear all your measurement results... it's too bad we won't cross paths at all, maybe next time though since we'll be on the same casting rotation time frame! I'll probably get around to posting pics after this next one, I've taken a lot since her cast removal, including of her skin breakdown which doesn't look as bad in the pics as it was in real life!But good luck to you too, hope everything goes well w/removal, travel, & recasting, will look forward to exchanging updates once we return!Take care & thanks for checking!~Joy>> Good luck this week at Erie. Are you staying in Parent Housing and what day are you guys leaving. Just wondering if we will cross paths? If you are still there on the 18th, keep an eye out for me. I have long red hair...you can't miss

me!> > How is Solana doing out of her cast?> > > > Noelle (12-2-01)> Ian (8-15-04)>

Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

September 11, 2006

That is a really great idea! Thank you

Kristal

Mom to Brett- SMA II- 6-1/2 years old

Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

Learn more about SMA:

www.fsma.org

www.smasupport.com

Re: Re: Good point e re: SMA students

w/assistants/ parent perspective

I just wanted to mentioned something I did that might make it easier for some

who are students now. I kept all my text books at home and then had the

instuctor keep one for me in the class room so I wouldn't need to be bringing

books to school. All I had to worry about what bringing a pen and folder with

papers. At the end of the year I would just return all the books.

---------------------------------

Stay in the know. Pulse on the new .com. Check it out.

November 16, 2006

Hi Joy:

I joined the survey site - say that you invited me,

and maybe you can get those extra points -

Sabetzadeh - aka Kathe in CA

--- Joy <jhoorm01@...> wrote:

> I have been doing surveys at home and getting some

> money for that. Here is the link

> to one good site that I have found. Sometimes they

> even have you test products or

> watch new shows etc...

> http://fun.mysurvey.com/join.cfm?r=2472072

>

> aclavern33@... wrote:

> I work from home. I have been working from

> home now for about 4 months. I

> really enjoy walking to my favorite chair, pulling

> up my laptop desk and

> laptop and going to work. No schedules...I work when

> I want too..

>

> Check out this website and read the bulletin

> boards...you will find many

> work at home companies.

>

> _www.wahm.com_ (http://www.wahm.com)

>

> Good luck

>

> Toni

>

> [Non-text portions of this message have been

> removed]

>

> Joy

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> Visit Joy's Homepage and Reading Room!

> http://jhoormann-ivil.tripod.com

> Come see My Dog Salsa!

> http://www.geocities.com/jhoorm01/Salsa.html

>

> [Non-text portions of this message have been

> removed]

>

________________________________________________________________________________\

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